My mom started showing signs of Alzheimer’s when I was 14 years old. The day she got her diagnosis of early on-set Alzheimer’s, my dad and I decided that we were going to be the ones to take care of her until the end. What we didn’t realize at the time was that somehow amongst the future years of heartache, suffering, and grief we would still find joy.
Every Alzheimer's patient shows different signs of the disease. No case is the same because different parts of the brain deteriorate at different times for different people. The stigma around Alzheimer's is that you become forgetful and the only symptom is memory loss. Those of us who have witnessed the digression of our loved ones know this is not always the case.
My mom was a hairdresser for 30 years. She colored my hair for me since I was 16 and I will never forget the day I was sitting in her styling chair, watching her struggle silently to remember the next step in the coloring process. I had enough experience to know that what she was doing was not right and instantly noticed her confusion. This is one of my favorite memories from when my mom was showing early signs, not because we were spending time together and not because we had great conversation but because I am proud of how I responded in that moment. As soon as I realized something was off I told her, "Mom, how about we just shampoo and condition me today and go get some lunch together?" I remember her smile and look of relief. I never mentioned anything to her and I am so glad I didn't. Instead, I tried to relish the feeling of her shampooing my hair, the feeling of my mom taking care of me, recognizing that things were changing and that it might be the last time I experienced either of those feelings. Something inside me told me that the roles might soon be reversed and that I would be taking care of her from now on.
It’s difficult to think back on all the changes, stages, and digression but one of the hardest things to watch was my mom’s personality slowly begin to change. She grew reserved and somber as the disease pulled her in. She would often lie in bed crying with my dad, telling him, "Something is wrong, I feel off." I love knowing that my mom was trying to communicate this to my dad. It makes me relieved to know that my dad would hold her in bed at night and tell her, "It's okay, I am going to take care of you and we will figure this out."
The symptom that was the most alarming to my dad and I was when my mom started to struggle with time and dates. My mom was a huge planner. We always had a giant calendar in our house filled with dates and activities coming up in the future. But soon she couldn't tell us what day it was when she woke up, nor could she tell us what was happening that day. In the beginning, my dad helped by getting her organized for each day at the salon. He would write down her appointments and their times in a way she could understand. Her friend and coworker Mary helped her handle money at the end of each appointment. Eventually my mom started missing appointments and losing clients, and that’s when my dad decided it was time to remove her from work.
Through this process we have learned that when someone without Alzheimer's loses something, they can think back to where they were the last time they had that item and retrace their steps. Someone showing early signs of Alzheimer's will not be able retrace their steps, becoming easily agitated and suspicious. Sadly, a lot of evenings consisted of my mom suspecting me of stealing her things. She would yell at me and tell me that I stole her purse, makeup, clothes, shoes, etc. It was something different everyday. It broke my heart to watch her become so unbelievably confused to the point where she would blame me for her confusion and often become violent towards me in her state of confused rage. I didn't sleep well at night because I was afraid of her. She was out of control and unpredictable. I would lay awake at night scared that she would come into my room. I wasn't scared of her hurting me because I am significantly bigger than her and could defend myself, but I would look up at the ceiling hoping she wouldn't come in my room because I was terrified of her breaking my 17-year-old heart even more. I don't blame my mom; I blame the small tangles at the end of each nerve cell in her brain, the ones that were clumping together killing off her judgment.
The term that refers to the type of confusion my mom would encounter at night is called "sundowners." The definition: "a person with dementia who becomes increasingly irritable or difficult as the day progresses." Each night, as the sun went down, my dad and I learned to prepare for the worst. We could get through the day by gently reminding her what day it was, the time of anything happening that day, and often just relaxing together by watching tv. However, when the sun went down she became substantially more confused
As the sun set each night she would start off by saying, "I want to go home." My dad and I would respond calmly by reminding her, "You are home." She would continue to repeat her phrase and we would continue to repeat ours. Each time she would say it with a little bit more passion. This cycle would continue until she would pick up her purse and head for the door. My dad and I would do our best to get in between her and the exit. We knew that if she went outside alone or got in the car to drive, she would end up lost, hurt, or worse. We would try to calm her down by saying, "You are home. Look, here is your closet, our dogs, the kitchen." It didn't help. Nothing did. She would continue to get more and more agitated. She would begin using vulgar language, calling us all sorts of horrible names. This would culminate in my dad physically restraining her and me trying anything I could to break through to her. I would look her in the eyes and try my hardest to reach in to find her. I knew she was in there behind the confusion, distress, and the anger but I couldn't get through. I remember praying that the neighbors wouldn't be able to hear the screaming that would go on during these scenes. I can't imagine what they would have thought was going on. Each night was like a murder scene and all three of us were left lifeless. The match would go on for hours until all of us were in tears and left physically and emotionally exhausted.
Nowadays, I’m trying to become a mom; my dad lives in Hawaii and is still my mother’s main caregiver at home. The pain and chaos that surrounded our small family went on for years but it was never too big of a challenge for us to face together. We still have joy because God has been good in all of our circumstances. She doesn’t know who we are and can’t remember any of the things that have happened the past 12 years but we will continue to care for her and will make new memories together with the time we have left.